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It Really is an Insane Existence

It’s now been more than 28 years since I began that journey. So many called me a fool.

“You’re throwing away your life,” they said. “You’ve just started your career. What are you thinking?”

And I’m sure now, in retrospect, others were questioning my motivation and/or motive. Was it about me and how I thought I could gain in some way?

All I knew then, was that GaSara needed somebody with her. Nobody else was stepping up to take the role. If left to her only son (the father that dropped us off with her shortly after my second birthday), she would be put in a nursing home rather immediately. She did not need nor deserve that. I couldn’t let it happen.

Like so many decisions I came to make in the years to follow, it was easy to see what I had to do, but I had no idea how it might affect my life. I didn’t know if I would be with her for two years, five years, or 10 years. I didn’t know if I’d be with her a month. I didn’t know if I would be able to continue my career or if I might lose it all together.

I didn’t know that GaSara would be diagnosed with Alzheimer’s disease and that I would watch her die a horribly slow and unimaginable death. All I knew, then, was that she needed me. I was moving back to Americus to care for her. It was what I was meant to do and my God would work out the rest. I always trusted my faith and it has never failed me.

For me, faith was and is an imperative. I couldn’t possibly make it through a single day without knowing there is a power, greater than myself that I can turn to for strength. I am certain I would have died, even as a child (when I was taught about the love of Jesus by GaSara and her contemporaries), without that power. I am convinced that Caregivers for loved ones with a degenerative disorder cannot survive without a similar faith. We cannot do it alone.

My faith is all-important to me, as is my God. I will refer to both freely. I call myself a ‘Jesus-Loving Hippie Freak.’ However, I do not want readers to be turned off by these references. It is my hope this offering encompasses believers and non‑believers of all backgrounds, and provides comfort, encouragement or hope, to those, like me, who will or have faced the difficult task of walking a loved one to her death. Faith is my answer. It may or may not be yours.

I’ve been a closet philosopher most of my life. Some of my friends have jokingly referred to me as “Dr. Sissy.” God gave me a brain that never sleeps. I waver between being extremely grateful for it, sometimes, and wanting to curse Him for it at others. Overall, I suppose I’m very thankful. But there’s a tremendous responsibility that goes along with a capacity for understanding. I think that is why denial is so easy for some to embrace.

“Ignorance is bliss!” as they say. “If I can’t see it, then it can’t hurt me.”

A lovely idea, just not too realistic!

Sissy’s philosophy # 187: It’s one thing to know, and another to respond accordingly.

I think “Christians” face this dilemma often. It may be easy to accept that Jesus Christ is your savior, but it’s a whole other matter to live, then, the rest of your life for Christ! Making the choice to become the primary Caregiver for someone poses the same kinds of dilemmas.

I said, for several years, I didn’t have a choice. There was no one else to take care of GaSara. I had to do it. Therefore, I had no choice. I said many things over the years that turned out to be bullshit. Certainly I had a choice! I could have told myself no. I could have let it go. I chose to come home and, for GaSara, it was the right choice. Honestly, I’m not completely convinced that it was the right choice for me. Yet, I’m very glad I made the choice. It was my choice.

After meeting hundreds of other Caregivers over the years, one thing has become very clear to me. It is just as loving and compassionate a choice to say, “No, I cannot become my loved one’s primary Caregiver,” as it is to say, “Yes, I will.”

That bears repeating … It is just as loving and compassionate a choice to say, “No, I cannot become my loved one’s primary Caregiver,” as it is to say, “Yes, I will.” This is so very important for us to realize.

As rewarding and fulfilling as my years with GaSara may have been, the time could easily have destroyed me. The jury is still out on whether or not that may be the case. For a little more than 5 years I gave piece after piece of myself to her. Literally, I tried to replace for her what she was losing to the disease, while unknowingly seeking no replacement for what I was giving away. Although greatly enriched by the experience, I still am, in many ways, a shell of my former self, struggling to remember and rebuild the ‘me’ that once existed. GaSara has been dead for almost 23 years (as of this edit); yet I still consider myself a Caregiver. And I am, to this day, what I consider: a Caregiver in Recovery. Perhaps, like an alcoholic, I might be in recovery for the rest of my life.

One of the results of my Caregiving was an almost total loss of social skills. When one chooses to spend 24 hours a day, 7 days a week, with someone who cannot readily communicate, and she does this over a period of years, one can go insane. I don’t think that happened to me. However, I lost all sense of social norms, of making social conversation, of simply being with other people. It got to a point where I would actually hyperventilate from fear, just going to the grocery store.

The second time I had a sitter for GaSara, Marjorie and I went out to eat for the first time in three years. Normally, my dinner was eaten after midnight, in a chair with a tray in the living room, when GaSara was finally asleep. I had to be close by her, so that I could hear if she got up. I had become quite a slob, really. Eating in an easy chair did not lend itself to Miss Manners’ book of etiquette!

I will never forget my horror when, while sitting there in the restaurant, nerves already shot just at the thought of being there, I noticed my napkin ever so blatantly sticking out of my shirt collar like a huge burning flag! I yanked it out and immediately attacked Marjorie for letting me put it there, as if it were her fault! The added irony was that she was so accustomed to my habits displayed at home she hadn’t even noticed my blunder.

I was supremely fortunate to have the loving support of my partner. Caregivers generally don’t have many friends. It’s hard to keep friends, or make friends, when you have to always say no. When I first moved back to Americus, I was able to take a job. I met several new friends. Within six months, I felt it necessary to quit my job to be at home with GaSara full-time.

It was around 10:00 on a Tuesday morning when Willie called me at my office, telling me GaSara was terribly upset and giving her the phone …

“Sissy! I just got back from church and I don’t know where everybody is,” she said, clearly frightened and confused.

I asked what she meant.

“I know I was on time! I got there for Sunday school right at 9:30 a.m. and nobody was there! Where is everybody?”

Realizing she was convinced it was Sunday, I tried not to contradict her.

“Well, I know it’s not the resurrection, because you’re still here, GaSara,” I told her, hoping uselessly to get a laugh.

I asked her to try and relax and if I could speak to Willie again. She gave her the phone.

“Yes, she got all dressed up pretty for church. I tried to tell her it was Tuesday, but she kept telling me to go home, Sissy,” Willie said. “I just went out on the back porch and waited for her to come back home.

“Can you come home, Sissy?” she asked.

I took an early lunch and went home to see about her. By the time I arrived, she had completely forgotten about church and was eating some cereal and bananas, lovingly prepared for her by Willie.

It was only a couple of weeks later that I got the shocking phone call from Willie’s daughter, Easter, telling me that Willie had suffered a stroke. Although, thank goodness, it was only a mild stroke, it would mean that our greatest ally could no longer help us. I turned in my notice at work and became GaSara’s fulltime Caregiver. That was around July or August 1989.

As GaSara began to lose her friends, when the disease dwindled her social skills, I began to lose mine. Whenever I got an invite, I had to turn it down. After a while, people quit calling me. Why should they call? I was no fun. Inviting them to the house was an option, but that wasn’t a very enticing invitation for most. As GaSara’s disease progressed, even talking on the phone, unless she was asleep, became almost impossible. I found it all very difficult to explain to people. Most couldn’t understand.

That’s when I came to call my daily life with GaSara and Alzheimer’s an “Insane Existence.”